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I think I need to declare a break from blogging, or perhaps change the way I do it. I find I am really only blogging for myself these days, to remember what happened and when, with regard to appointments etc and am not having time or energy to blog about more interesting things. I am also rarely reading other blogs as I cannot find the time or energy for that either. I will leave my blog public for now, but am even considering just keeping it private, or taking it down. I am not sure.

I find I am spending a lot of time on facebook talking to other people with ME and other chronic health problems and that has replaced blogging a bit for me, despite having met most of them via my blog! Perhaps it has served it’s purpose…

Anyway, thanks for reading this far and Happy Solstice, Season’s Greetings etc.

I am very late in blogging about my last GP appointment, as things have been very busy here and I have just not had chance. It was months ago but I do want to just say that she was excellent again and confirmed to me that even little gentle stretches that are not held long are beneficial and to just give it a try.

I have been doing these exercises (well, 7 or 8 out of the ten, as a couple feel wrong and the other I can only do sometimes due to my shoulders seeming to dislocate a bit) every day for weeks now and I am feeling that they are certainly getting easier. I can hold them for a bit longer and can do more than I could at the start. I think there is a looser feeling, though I am still getting pain in this area. It has been painful for many years so I am not going to get rid of the issue any time soon! I think the fact that the area feels good afterwards, even if it builds tension back up pretty quickly, is a start in the right direction. It feels like it increases blood flow.

Giles explains how to do the exercises on the video so I won’t explain them. I tend to do them in the morning. If the area feels very stiff when I wake up, as it often can, I put a heated wheat bag around my neck for a while before I do the stretches to make sure the muscles are warm and ready. I stretch while being aware of my breathing – stretching on the out breath. I don’t do a full stretch, only feel the first small pull, and go a tiny bit further. I have found that any holding of the position leads to increased pain so if I start at the full stretch (before pain) I cannot hold it long as it becomes uncomfortable. I just find a mid-point so that I can hold it for a little bit longer. In areas the seem to become sore very quickly, I just do several very gentle stretches in succession.

I had terrible headaches when I started these stretches, but this was due to a medication increase. It did however stop me from doing the exercises some days and I stopped for a week or so to test if they were contributing to the head pain. There did not seem any link so I am now more confident and do them every morning. My headaches have improved.

Now that I have seen some benefit from this area I would like to expand my stretches to include other areas of the body. As I said in my last post, I have various sheets with diagrams of exercises given to me over the years by physiotherapists. I just need to find which ones will be most useful to spend my energy on in terms of being useful in pain/tension relief and take it really really gently so as not to flare up my pain. I find that I can injure myself incredibly easily. I get days of pain from very simple things, like leaning over to cuddle someone for a couple of minutes, or holding a shopping basket on my lap when in my wheelchair, even when not really supporting it, just holding my arm in that position… Life feels very hectic at the moment, so I won’t be starting any new exercises just yet.

I do believe there are serious problems in muscle function that are unrelated to underuse of muscles due to inactivity in people with ME. I am just trying to keep things moving and maintain the function that I have rather than necessarily build myself up. We will see how it goes. I just want to minimise the long-term impact of living like this if I can, in terms of secondary problems such as osteoporosis and loss of core strength, which is already a problem for me; which could make things harder than with just having ME/POTS etc. in future.

I have wondered about contacting the physiotherapist from the local CFS service to get help and advice with this, but I have not found them very useful in the past. I wonder if they would do a full assessment of me? Something to think about for next year. In my much more recent POTS specialist appointment she suggested seeing a physio, in relation to my mobility getting worse (I was saying I could not go out without my wheelchair these days and did not think I had dramatically improved since seeing her (though some acute symtoms have improved), particularly in relation to leaving the house/stamina). She did not ask why my mobility was worse or suggest exercises specifically for helping with POTS symptoms. When I asked her a couple of years ago about leg exercises (meaning very gentle movement) she said not to as it was too early… I am sure there must be something I can do, but I am not sure the CFS physio will be very responsive to my needs as he overestimated what I could do when I saw him before, and I am worse now… we shall see. I think an in-depth phone call will be in order before I waste energy going down there for an appointment.

ME/CFS Awareness

ME/CFS Awareness


December 2011
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